Finding Our Voice! Ending The Silence
by Mary Ellen Copeland
Speak out! Speak out! Speak out! If I said this a million times it would not be too much. I have been doing mental health
recovery education for 12 years now.
Through that time I have maintained my focus on simple, safe, non-invasive self-help strategies and skills that will help
people to feel better. While doing this work I have held the vision that the mental health system would come to appreciate
that people can recover and would work with people to assist them in their recovery.
Care providers would come to realize that each person must be in charge of and responsible for their own recovery, that
they would see the value of validating a person's experience and of peer support.
They would support empowerment, personal responsibility, self-advocacy and education for every person.. And, in fact, some
of this has come to pass, in places where wonderful work is being done and progress is being made.
There are hundreds of recovery educators, many of whom have been users of services, who are teaching others how to develop
Wellness Recovery Action Plans and showing them that there are choices they can make in their lives.
Mental health commissioners and systems are changing their focus to recovery. Hard working health care providers are joining
the ranks of people who understand that these symptoms are not the "end of the road" but are part of the process.
Care providers, family members and friends rejoice in our progress.. But there are still many people who are being forced
or coerced into treatments and lifestyles that are not their choice.
Many people continue to be repressed and stigmatized. Many are being physically and emotionally abused. Many are told they
have a medical illness or a "broken brain" and then are punished for their symptoms--symptoms which are often extremely painful
and terrifying, many people stop fighting and end their lives.
Meanwhile, many of us remain silent. Perhaps we have been taught to be silent, taught that we have nothing of value to
say and that we must let others determine the course of our lives. We may have been taught or feel that those of us who experience
psychiatric symptoms are incapable of rational thinking and of speaking out.
We may remain silent because we are part of a minority and our views have often been ignored. Some of us may even fear
retribution, such as diminishing support and services, separation from our families, homelessness, or worse... if we don't
do as we are told.
Maybe we just don't know what to do or how to begin. Sometimes it's just easier to look the other way and pretend it isn't
So while I continue to teach about common sense recovery systems that have been overlooked far too long, in my writings
and presentations, you will now hear a stronger voice. A voice that says we must stop this injustice now. We must all speak
out--and that includes me. Many of you are already speaking out. But many more voices are needed.
Those of you who can speak from experience but have lost your voice, your voice is important. If you feel like you never
had a voice, try using it. The more you use it the easier it is. In order for injustice to be overcome it takes many voices,
and the voices we most need to hear are from those of us who have been silenced. It is the only way we can create the change
that must happen--many voices speaking as one..
How Do You Find Your Voice??
1. Learn your
rights! A list of basic human rights was published in issue
1.2 of this newsletter. These rights include the kinds of things most people take for granted, such as the right to change
your mind, to follow your own values and standards, to say "no" to anything when you feel you are not ready or it is unsafe
or it violates your values, to determine your own priorities, to meet your own needs for personal space and time, to decide
on your own treatment, to be playful and frivolous, to be in a non-abusive environment, to have the friends of your choice,
and to be treated with dignity and respect.
2. Begin practicing using your voice in small ways that feel safe to you. It might be telling someone that you won't give
them a cigarette or buy them a beer, that you will do the dishes or take your shower when you want to, that you will decorate
your room the way you want it, that "your" treatment plan must reflect your goals and dreams, that if you didn't develop it
it is not your treatment plan, that you will decide what you will put in your mouth or do to your body, that you will choose
your own friends.
3. When you feel that you have had enough practice, think about something "bigger" in your life that you want and need
to address. It might be insisting on a change in medication from one that causes side effects that are making you miserable.
It might be finding good housing or getting work that uses your special skills and talents.
Lack of self-esteem and fear of authority may have kept you from addressing some issues in the past. Remember, you are
as important and special, and as smart, as anyone else--even the people who represent authority figures in your life.
Regain a strong sense of yourself and the great person you are by 1) writing a paper that lists all your positive attributes,
strengths and accomplishments, and reading it over and over, 2) asking people who like you, people that you trust, to make
a list of your strengths that you can read whenever you have a chance, 3) taking very good care of yourself, and, 4) working
toward meeting your goals and dreams. You deserve the very best that life has to offer!
4. Talk with your supporters about what you would like to do--what change you would like to create in your life or in the
Plan a strategy, and revise it as you learn more. If your strategy includes talking with an "authority figure" that you
feel may be rude or threatening, take a supporter along with you. Then ask for what you want and need.
If you are told that you can't have it, tell them again. Keep telling them. If necessary, see someone else. But don't stop
until your voice is heard and you get what you need and want for yourself.
5. When you have had some practice with the previous steps, you may feel ready to speak out about more universal mental
health issues, like the use of isolation and restraints, abuse, forced treatment, poor treatment, incarceration and keeping
people tied into the system who don't need to be there.
Get together with others who are working for this cause. You may need to set up meetings and gather people together. If
so, please do it. You can work together to strategize as a group about how you will meet this need. Taking action together
is very empowering. Visit the National Protection and Advocacy web site at www.protectionandadvocacy.com if you feel your rights are being violated or for more information.
Whenever you feel comfortable, start sending e-mails, letters, phoning and meeting with public officials and others
who have the ability to facilitate much needed system change. David Oaks, Director of Support Coalition International, can
put you on an e-mail list so that you will be advised of issues related to psychiatric injustice that demand response.
Then you can join thousands of others who have responded to this need and ended injustice for many. His contact information
454 Willamette, Suite 216, (PO Box 11284))
Eugene, OR 97440, USA.
Toll free: 1-877-MAD-PRIDE
General info: email@example.com.
Phone: 541-345-9106. Fax: 541-345-3737.
Keep In Mind As you take up this challenge to speak out, you are certain to meet obstacles. Don't let them cause you to
With our collective courage, strength and persistence, we can surmount these obstacles and create a system that works for
Guidelines For Speaking Out
* Educate yourself about the issues. Read. Explore the internet. Go to meetings. Know the issue. Decide how you feel. Then
speak out where you will be heard--contact key officials, go to board meetings, write letters to the editor, call in on talk
shows, send e-mails.
* It takes many people to create change, not just one very strong individual. Beware of people who want to be the only
one in charge or the only one speaking out. Circumvent them as kindly as possible. * Treat others with dignity, compassion
and respect, listening to their views and challenging them when necessary..Insist that others treat you well, even when you
are saying things that they don't want to hear.
* Stay as calm as possible when speaking out. If you "lose your cool" you will be accused of being "just another mental
patient." You can let out your frustration when you are alone or with good friends.
* As you find your voice, you may be tempted to talk too much--to go on and on and on. This is never a good idea. If you
do this, you silence the voices of others who also need to be heard. Strongly and briefly make your point. Then give others
their chance to speak. Again, it is the voices of many, not just one, that will make the difference!
Support, Education, ResearchThe following is a listing of agencies and organizations that give
information about mental illness, offer support groups, do advocacy on behalf of people with mental illnesses and their families,
and/or support or do research into these illnesses. Some have local offices and contact people. Contact your United Way or
the national organization for further information.
and Advocacy Organizations
Click on any organization below for a short
description and contact information.
Alzheimer's Association, Inc., 919 North Michigan Avenue, Suite 1000, Chicago, IL 60611; (800) 621-0379 or (312)
335-8700; www.alz.org. Provides, support groups for families, educational and patient care materials, information about local resources and services.
Alzheimer's Disease Education and Referral Center, P.O. Box 8250, Silver Spring, MD 20907-8250; (800) 438-4380, or
(301) 495-3311; www.alzheimers.org A service of the National Institute on Aging which distributes information on Alzheimer's disease, current research activities
and services available to patients and families.
American Anorexia/Bulimia Association (ABBA), 165 W. 46th St., Suite 1108, New York, NY 10036; (212) 575-6200.
American Foundation for Suicide Prevention, 120 Wall St.,22nd Floor, New York, NY 10005; (212) 363-3500. Support group and
other information available.
Anorexia Nervosa and Related Eating Disorders, Inc. (ANRED), P.O. Box 5102, Eugene, OR 97405; (541) 344-1144; www.anred.com Have joined forces with National Eating Disorders Inc. (NEDO), (918)481-4044.
Anxiety Disorders Association of America, 6000 Executive Blvd., Suite 200, Rockville, MD 20852-3801; (301) 231-9450. This
organization's purpose is to promote the prevention and cure of anxiety disorders and to improve the lives of people who suffer
from them. Educational and informational materials, a newsletter, and referral services are available.
Autism Society of America, 7910 Woodmont Ave., Suite 300, Bethesda, MD 20814; (301) 657-0881; (800) 328-8476; www.autism-society.org
Center for Mental Health Services (CMHS), Office of Consumer, Family and Public Information, 5600 Fishers Lane, Room #13101,
Rockville, MD 20857; (301) 443-2792. CMHS is a component of the Substance Abuse and Mental Health Services Administration
of the U.S. Public Health Service. An informational kit is available. There also is a web site, the Knowledge Exchange
Center for Psychiatric Rehabilitation, Boston University, 940 Commonwealth Avenue West, Boston, MA 02215; (617) 353-3549;
(617) 353-7700 (TDD); www.bu.edu/cpr/ This Center publishes the Psychosocial Rehabilitation Journal.
Children and Adults with Attention Deficit Disorder (CHADD), 8181 Professional Pl., Suite 201, Landover, MD. 20785; (301) 306-7070;
Compassionate Friends, Inc., National Headquarters for Bereaved Parents, P.O. Box 3696, Oak Brook, IL 60521;
(630) 990-0010; www.compassionatefriends.org Information available on starting a bereavement support group.
COMPEER, Monroe Square, Suite B-1, 259 Monroe Avenue, Rochester, NY 14607;(716) 546-8280; www.compeer.org Matches caring, sensitive, trained volunteers with mental health consumers in a one-to-one relationship. Training materials,
resources, and information about setting up a program are available.
D/ART, (Depression Awareness, Recognition and Treatment Program), 5600 Fishers Lane, Room 10-85, Rockville, MD 20857; (800) 421-4211
or (301) 443-4140; www.nimh.nih.gov It is a professional and public education program sponsored by the National Institute of Mental Health. Informational brochures,
booklets and kits available.
Dayton Suicide Prevention Center, P.O. Box 1393, Dayton, OH 45401-1393; (800) 320-4357 or (937) 226-0818. Information
on starting a bereavement support group and a guideline manual available.
Depression After Delivery, P.O. Box 278, Belle Meade, NJ 08502; (215) 295-3994; (800) 944-4773; www.behavenet.com/dadinc
Department of Justice, Office of Americans with Disabilities Act, Civil Rights Division, P.O. Box 66118, Washington, D.C.
20035; (202) 514-0301.
Depression and Related Affective Disorders Association, Johns Hopkins Hospital, Meyer 3-181, 600 North Wolfe Street, Baltimore,
MD 21287-7381; (410) 955-4647.
Emotions Anonymous, P.O. Box 4245, St. Paul, MN 55104-0245. Support groups and information for consumers of mental health
The Federation of Families for Children's Mental Health, 1021 Prince Street, Alexandria, VA 22314-2971; (703) 684-7710; www.ffcmh.org A parent-run organization focused on the needs of children and youth with emotional, behavioral or mental disorders and their
families. Informational and educational materials and a newsletter are available. They also have information about, support
groups and have referral information.
Foundation for Depression and Manic Depression, 24 East 81st Street, Suite 2B, New York, NY 10028; (212) 772-3400.
Grow, Inc., P.O. Box 3667, Champaign, IL 61826, (217)352-6989 A group for consumers of mental health services,
which has local chapters that provide information and support groups. Some groups work with people who have both mental illness
and a substance abuse problem.
Indianapolis Center for Congregations, 303 North Alabama Street, Suite 100, Indianapolis, IN 46240; 317-237-7799;
fax 317-237-7795; e-mail firstname.lastname@example.org; www.congregationalresources.org/MentalHealth.asp The Indianapolis Center for Congregations is a resource/referral agency for churches of all faiths, offering seminars and
Juvenile Justice Clearing House, P.O. Box 6000, Rockville, MD 20850; (800) 638-8736; www.ncjrs.org The Clearinghouse collects, synthesizes, and disseminates information on juvenile justice and delinquency prevention. It
offers information on runaway, missing, and abducted children, sexual exploitation, the response of the criminal justice system
to child abuse, and other topics related to child and adolescent maltreatment.
Learning Disabilities Association of America, 4156 Library Road, Pittsburgh, PA 15234; (412) 341-1515; www.ldanatl.org
Lithium Information Center, Madison Institute of Medicine, 7617 Mineral Point Rd., Suite 300, Madison WI 53717; (608) 827-2470;
Fax (608) 827-2479; Email: email@example.com; www.miminc.org/index.html Collects and disseminates information about the biomedical uses of lithium. Two computerized systems are available which
are the Lithium Library and the Lithium Index.
Matrix Research Institute/Penn Research and Training Center
of Mental Illness and Work, 6008 Wayne Avenue, Philadelphia,
PA 19144; (215) 438-8200; (215) 438-1506 (TDD).
Mental Health Ministries, www.mentalhealthministries.net An ecumenical, interfaith outreach through the California-Pacific Conference of the United Methodist Church. Their mission
is to educate clergy and lay persons for the purpose of decreasing the stigma associated with mental illnesses in our faith
communities. The Rev. Susan Gregg-Schroeder, Coordinator of Mental Health Ministries for the California-Pacific Conference
of the United Methodist Church, announces a new Web site that is linked to the conference Web site under the Committee on
Church and Society: www.mentalhealthministries.net. You can find a series of helpful videos, upcoming events, information on the Caring Communities program, and video. Send
e-mail to firstname.lastname@example.org.
National Alliance for the Mentally Ill (NAMI), 2107 Wilson Blvd., 3rd. Floor, Arlington, VA 22201; (703) 524-7600.
Helpline is (800) 950-6264. Web site is www.nami.org A support, education and advocacy organization of families of persons with a mental illness, those who have the illness and
mental health professionals. It provides referrals and information about its local chapters which have educational and referral
information and support groups. NAMI provides literature, videotapes, posters and newsletters. NEW: Nami FaithNet Suggested
Reading page is at www.faithnetnami.org/h_reading.htm
NARSAD (National Alliance for Research on Schizophrenia and
Depression), 60 Cutter Mill Road, Suite 404, Great
Neck, NY 10021; (516) 829-0091; www.mhsource.com Supports research concerning schizophrenia and mood disorders (major depression and bi-polar disorder). A newsletter is available.
National Association of Anorexia Nervosa and Associated Disorders
(ANAD), P.O. Box 7, Highland Park, IL 60035; (847)
National Coalition for the Homeless, 1012 14th St. N.W., Suite 600, Washington, D.C. 20005-3406; (202) 737-6444;
National Clearing House for Alcohol and Drug Information, P.O. Box 2345, Rockville, MD 20847-2345; (800) 729-6686; www.health.org A national clearing house for alcohol and drug information overseen by the Substance Abuse and Mental Health Services Administration
(SAMHSA) of the United States Department of Health and Human Services. It offers brochures, videotapes, guides and surveys,
many of which pertain to children and youth.
National Depressive and Manic Depressive Association (NDMDA), 730 North Franklin St., Suite 501, Chicago, IL 60610; (800) 826-3632
or (312) 642-0049; www.nichcy.org A support, education and advocacy organization for people with depression and manic depression. Information is available
about referral, support groups, educational literature and a newsletter.
National Information Center for Children and Youth with Disabilities, P.O. Box 1492, Washington, D.C. 20013-1492; (800) 695-0285. The
Center assists parents, educators, caregivers, and others by providing personal responses to specific questions, referrals
to other organizations, publications, and technical assistance to parent and professional groups.
National Institute for Mental Health (NIMH), Consumer Information Center, P.O. Box 100, Pueblo, CO 81002 and
NIMH, Division of Communications, 5600 Fishers Lanes, Room 15C-105 Rockville, MD 20857; (301) 443-3783; www.nimh.nih.gov A division of the National Institutes of Health (NIH) which has available educational and informational literature, videotapes,
posters and public service announcements.
National Mental Health Association, 1021 Prince Street, Alexandria, VA 22314-2971; (800) 969-6642 or (703) 684-7722;
www.nmha.org Information and educational literature on mental illness, mental health and research. Written materials, videotapes, posters,
pubic service announcements are available.
National Mental Health Consumer's Self-Help Clearinghouse, 211 Chestnut Street, Suite 1000; Philadelphia, PA 19107; (215) 751-1810;
National Mental Health Services Knowledge Exchange Network, P.O. Box 42490, Washington, D.C. 20015; (800) 789-2647; www.mentalhealth.org A network sponsored by a SAMHSA division, the Center for Mental Health Services (CMHS). The Network offers information about
federal, state, and local mental health agencies; CMHS technical assistance centers; other clearing houses and information
centers; consumer and family advocacy, mental health, and professional organizations.
National Stigma Clearinghouse, 245 Eighth Avenue, #213, New York, NY,10011; (212) 255-4411; http://community.webtv.net/stigmanet/STIGMAHOMEPAGE
National Women's Resource Center for the Prevention of Alcohol,
Tobacco, and Other Drug Abuse and Mental Illness,
515 King St., Suite 410, Alexandria, VA 22314; (800) 354-8824. The Center is sponsored by the Substance Abuse Mental Health
Services Administration (SAMHSA) of the U.S. Department of Health and Human Services. It includes information relevant to
pregnant women and their infants and children, and female adolescents. Services include: technical assistance to states, communities,
professionals and policy makers; a Community Training Institute; National ResourceLink Conferences; and a direct, on-line
computer system of information called the Prevention Research and Education Management Information System (PREMIS).
Obsessive Compulsive Anonymous (OCA), P.O. Box 215, New Hyde Park, NY 11040; (516) 741-4901. Information and support
Obsessive Compulsive Disorder Foundation, P.O. Box 70, Milford, CT 06460-0070; (203) 878-5669; www.ocfoundation.org Referrals, support group, educational materials, videotapes, buttons, posters and a newsletter are available.
Obsessive Compulsive Information Center, Madison Institute of Madison, 7617 Mineral Point Rd., Suite 300, Madison, WI
53717; (608) 827-2470. Order forms and brochure www.healthtechsys.com/mim.html.
Panic Disorder Education Program, NIMH, 5600 Fishers Lane, Room 7-99, Rockville, MD 20857; (800) 647-2642 or (301)
443-4536. Educational materials are available which include a videotape, brochures, and pamphlets.
Recovery, Inc., 802 North Dearborn St., Chicago, IL, 60610; (312) 337-5661; www.recovery-inc.com Self-help organization for consumers of mental health services. Information about support groups and a newsletter is available.
STEMSS Institute, National Headquarters, 140 E. Dekora St., Saukville, WI 53080; (414) 268-0899. Support groups and programs
for people with both mental illness and substance abuse.
Tardive Dyskinesia/Tardive Dystonia National Assn., 4244 University Way, N.E., P.O. box 45732, Seattle, WA 98145; (206)
Tourette Syndrome Association, 42-40 Bell Boulevard, Bayside, NY 11361-2820; (800) 237-0717; (718) 224-2999.
Virginia Interfaith Committee on Mental Illness Ministries (VICOMIM), Virginia Annual Conference, Room 113, P.O. Box 1719, Glen Allen,
VA 23060; www.vaumc.org/gm/micom.htm; Committed to educating clergy and laity towards an awareness and sensitivity within the faith communities about mental illness.
WELLCOA (Wellness Councils of America), 7101 Newport Avenue, Suite 311, Omaha, NB 68152-2175; (402) 572-3590. Has available
for a fee, "Downtime, A Worksite Guide to Understanding Clinical Depression," which is a package that includes a guide and
videotape on recognizing and dealing with clinical depression.